Chronic Illness Chronicles

I have been putting off writing this blog post for awhile. I have started it a few times and only got about a sentence in before I stopped. The past 6 months have been the hardest 6 months of my entire life this far. So here it is…

MALS. Median Arcuate Ligament Syndrome. That is my diagnosis. My answer. The cause of all of my pain, suffering, lifelong challenges I have faced. I finally have an answer. 

I would be lying if I said I thought I would ever get answers. I lost that hope years ago. But, I have it back now. Before I get ahead of myself here, let’s start at the beginning…or October, I don’t have time to write about the last 25 years and how everything was my undiagnosed MALS. 

Here’s the story:

The last blog post I wrote was talking about how I needed a feeding tube. After that things went downhill, fast. Right after that appointment my dietitian switched jobs and I was unable to see her for 3 weeks. Once I was able to see her again, things got more complicated and I was unable to get the nutrition support I needed. However, in October my nutrition was not nearly as bad as it currently is, but we will get there. October was the first time vascular compressions went on the table. From October until last week I have had countless tests done. I have been at the hospital more than I have been at work, at least it feels that way. All of the tests I had done kept coming back normal or something was slightly off but not off enough to be the cause of my symptoms. 

November and December were full of testing and more appointments. Everything remained inconclusive but I was not giving up. By this time I was eating less and less and moved from a soft food diet to a liquid diet. It was really hard to spend Thanksgiving and Christmas drinking OWYNs while I watched my family enjoy the holiday food and drinks. By the end of December I was mentally drained but I kept pushing because I just had to.

This brings us to January. After fighting with my doctors and insurance company I was able to get a CTA done in January. This was the most important test I needed. At first my insurance company was not going to cover the scan. By some miracle I got a call the day after I said schedule it anyways I’ll figure the money out. The woman on the phone told me “I am not sure how this happened but we just got a new fax from your insurance company, they’re going to cover the scan”. I cried instantly. 

So I had my CTA and then spent the next few days thinking I could read it even though I had no idea what I was looking at. I sent the disc to the vascular surgeon I was going to see but I never got an appointment date…I still haven’t. The good news is, I was told about another vascular surgeon by a close friend who recently saw him. His name is Dr.Hsu. I got an appointment with Dr.Hsu for 2 weeks after I called. This puts us at February 13th. 

The night before my family and I drove to Danbury, Connecticut. A 3 hour drive to see this surgeon. Let me tell you… it was worth it. So we woke up the next morning and went to my appointment where I was told I have the anatomy for neurogenic MALS. I was not particularly shocked by this. Scared? Yes. Shocked? No. Dr.Hsu explained what the next steps are and I left and scheduled my celiac plexus block for March 14th. 

By the time mid February hit I had severely declined. I was getting 500 calories in a day if I was lucky. The pain was too severe to even get liquid down. I was getting in maybe a bottle of water as well and I have POTS so I need more hydration than the average person. I was still working but I really should not have been. I could barely function. My cognitive level has declined so significantly I had to withdraw from my graduate class and get more workplace accommodations. I was unable to climb 3 stairs don’t even think about an entire flight of stairs. It was bad, very bad. My coloring was completely gray, my eyes had huge red circles, my lips never changed from the shade of purple, I was losing hair, and just overall had no energy. It got to the point where I didnt even have the energy to send a text. That was too hard. My days consisted of me waking up late, dragging myself to work where I used absolutely anything I had in me to then go home and get in bed and fall asleep. My weekends consisted of me waking up for about an hour and then falling asleep for another 5+ hours. My body was exhausted. I was scared. I never thought I would decline that much at 24 years old.

 It stayed this bad up until my nerve block. I traveled back down to Connecticut with my dad March 14th. I had my nerve block and woke up from anesthesia with no pain for the first time ever. I could breathe, physically breathe. I was able to eat 4 chicken fingers and a slice of pizza. That’s the most food I have eaten in months. 

For the past week I was on cloud nine. The amount MALS affects your day to day life is severely debilitating. To list a few things I was able to do:breathe(i don’t think i ever had asthma its been MALS the entire time), eat, drink water, wear a bra, wear pants that are my real size, laugh, sing, talk(because I could barely talk before my block from pain and trouble breathing), shower, sleep, i could rest my phone on my stomach, hug others, I could even go to work give a softball lesson right after like not even go home first THEN go to the store THEN shower AND clean when I got home…. 1 of those activities is what I could do within one month. So that was huge!!! 

Fortunately I was able to get through my 25th birthday with no pain. That was the biggest blessing. Unfortunately, my nerve block has worn off and my pain is back in full force. I am incredibly thankful for the time I was able to be symptom free. Getting the nerve block was life saving to me. It showed me that there IS hope and there IS a chance I will get better. Sunday night before my block fully wore off I had a pretty intense panic attack. I was terrified for this pain to come back. It is worse than debilitating. I wish I had the adjective to describe it. I was scared I would never feel as good as I did again. I was scared of a lot of things. 

Having MALS ,and the short version of the process to get a diagnosis, is pure hell. When I say I lost all hope I really did. I was preparing for the worst and pushing my closest loved ones away to protect them from seeing me this sick. I became a shell of myself. Through all of the pain and suffering, and there was a lot of that, I did learn and grow a lot mentally. Although I am still incredibly terrified of getting open abdominal surgery, I have hope back. I feel a weird sense of relief and calmness knowing that I have definitive answers. I know one thing for sure, I will never ever take my ability to eat, walk, talk, breathe, etc for granted ever again. I have so much gratitude and appreciation for life and all that it gives you. I am so grateful for my body for doing its very best to keep me going and protecting me from pain. She really is trying! Yes there are and will be days where I feel very I HATE THE WORLD! But I have learned to let myself feel those feelings. If you dont it only makes it worse. 

So that’s where I’m at. Waiting for a surgery date and just doing my best to manage the pain and stay hopeful. I took pictures and videos when I felt my best and I have an absolutely amazing support system who is going to help me get through this. Surgery will be intense. Its open abdominal surgery to remove nerves, reposition my diaphram, and I will be in Connecticut minimum 2 ½ weeks post op. 

If you are interested in MALs and its symptoms I will be writing a blog post to get that information out there. MALs is a rare disease that needs more attention so others dont have to suffer as long as my friends and I have. 

Thank you to those who continue to support me and send me well wishes. It truly means more than you can even imagine. Being sick is isolating. If you or anyone you know are struggling with any illness please feel free to reach out. No one should have to navigate illness of any kind on their own. 

And a special thank you to my parents for showing me how to be so strong and for everything you do for me. Thank you for going to all of my appointments with me, doing research, and keeping me going. Thank you to Hayley for everything you do for me each day. Thank you to Angela, Erica, and Kaya for being there to talk about the insanity of chronic illness. Angela, I wish we didn’t have to go through this but I am beyond thankful to have your support before and after each appointment and each day. We will get through this battle. Thank you to my support system at work, I would not be there still without your help.Thank you to all of my friends, the girls I coach, and my family for your constant support. Thank you.